Groundhog Day - 12 months to live or not!?

Groundhog Day – 12 months to live or not?

On this day in 2017, I was told, in the worst way (if that is even possible) my breast cancer had metastasized to my liver. While I had a pet scan that morning and we knew that we could hear that my cancer had returned, I just had thought recurrence not metastatic. I really did not understand.

Unfortunately, my oncologist was off that day, so when we returned to receive the results of the Pet Scan, we were met with a Fellow, who we had never met before. Admittedly, that meeting is a blur, but I do recall that English was not his first language and we had difficulty understanding him. What I heard – the cancer has metastasized to my liver, this was really bad, and would have 6 to 12 months to live. What he actually said, who knows, but this is what I heard. He had no plan or next steps to offer, just that our oncologist would follow up with us. Of course, it was a Friday.

In July 2014, I was diagnosed with Stage 2B, ER/PR positive – Her2 Negative Breast Cancer. During my treatment, I found out that I was positive for the BRCA1 gene.  I did chemotherapy, bilateral mastectomy and 35 radiation treatments. After this, I was declared “Cancer Free” in March 2015. However, there were no more scans, apparently this is standard protocol to not confirm this. Just 90 days checkups with my oncologist and an aromatase inhibitor daily to keep the cancer away. These checks up consisted of a physical exam and blood work. Thank goodness my oncologist believes in monitoring tumor markers in the blood work too, many do not.

I wish I knew about my BRCA1 status before I started my treatment, I have so many regrets about the decisions I made during this time. But I learned a lot and did not make those same mistakes this time around. Biggest lesson learned was RESEARCH and get several opinions and options, do not accept the status quo AND advocate and educate myself on what is the best plan for me.

When I was finally able to meet with my oncologist the following week, we did a biopsy and determined that my cancer had not only metastasized, but the characteristics changed. The cancer was now Triple Negative, the most aggressive form of breast cancer along with now being Stage IV Metastatic, the only breast cancer that KILLS.

There were 4 presented options for my cancer now, approved by the FDA, which all came with horrible percentage of success rates and quality of life. Kent and I just did not could not decide which path to go on, they all seemed bad with limited guarantees of giving me more time to live, while offering me possible limited quality of life.

We decided to seek out a second opinion. This was the best decision of my life so far. The oncologist at Dana Farber, Dr. Erica. Mayer presented us with the same 4 options previously offered PLUS 11 possible clinical trials that were open or opening that I would qualify for. Clinical Trials are not only competitive as there are only so many spots available, but very targeted not just your type of cancer, stage but also how many lines of treatment you have had.

Triple Negative Breast Cancer has a lot of trials available now as the “standard of care” options had such bleak outlooks and other cancers had already found better options for metastatic due to clinical trials, like Herceptin for Triple Positive Cancers.

We thoroughly went through all the trials available, possible side effects and quality of life. We picked the one we thought would have the best results. BUT it was not available to me in Jacksonville, my hometown, but it was open at Dana Farber. To join this trial, I would need to travel, every 3 weeks to Boston, for 2 nights, and receive treatment there. Lucy, our daughter, was 5, and we had no family that lived locally. We decided to make this commitment to try and add more time to my life. Our family, friends, nanny and even strangers, stepped up and helped us with our daughter to allow us to do this. Without this amazing support, we could not have done this. Yes, there were people in our lives, who let us down and were not there for what we needed. We know though, everyone deals with this in their own way, and everyone has something they are facing, we try not to judge, be disappointed and expect nothing more.

In August of 2018, the trial actually opened up at my local hospital, Mayo Clinic, in Jacksonville and I was allowed to move my trial, eliminated our need to travel for treatment, a game changer.

The trial, TOPACIO, is the best decision I made, no regrets. It is saving my life. I am still on trial and will be for the rest of my life, unless it stops working, but I refuse to consider this. I would rather say, until science catches up and there is a CURE. The drugs I am on are brand names, Zejula, made by Tesarso (Now owned by GSK) and Keytruda, made by Merck. Zejula is a PARP inhibitor and I take it daily. Keytruda is immunotherapy and I receive an infusion, every 3 weeks. I have a CT Scan with contrast, every 9 weeks, to confirm it continues to work.

In March of 2019, the trial is working so well, that I am considered NEAD (No Evidence of Active Disease), this means that my tumor has shrunk so much that it is impossible to find on the scans. It does NOT mean that the tumor is gone, it does NOT mean that I cured from Stage IV Metastatic Breast Cancer. It is important to know that there is NO CURE. I will never hear those words or even “Cancer Free” but that does not mean I won’t have a long life to live. I believe I will.

The drugs I am on, while FDA approved for other cancers, are not approved for Breast Cancer. I do not know the status or plans by Merck to get Keytruda approved for certain Breast Cancers by FDA, but based on how generous Merck is by providing access to many breast cancer patients through compassionate use, outside FDA approval and free to the patients aa insurance cannot approve the use of non-FDA approved drugs and pay for it.  I do know that while GSK has obtained approval for Zejula for Ovarian Cancer, they will not be moving forward and get it approved for Breast Cancer. Triple Negative breast cancer characteristics closely align with Ovarian cancer, so the treatments that work are similar. I cannot tell you why they will not try for FDA approval but there other 2 similar drugs on the market that have already been approved for Triple Negative by the FDA, so PARPs are available.

For me, while they will close my trial, Tesaro has guaranteed me access to Zejula for as long as it continues to work for me. I am grateful for that. Merck is providing me Keytruda through compassionate use now and I have no expectations that they will end this program until/if it becomes available through FDA approval.

Where am I on Groundhog Day, 3 years after being told that I had 12 months to live?  I am raising my beautiful 7-year-old daughter with my incredible supportive husband, Kent. I am so lucky! Yes, I said LUCKY, many, many women are not having the success in their treatment that I am especially in the first line of treatment, and many do not have supportive husbands or even families.  I work full time, have not ever had to take a break from work. I build an amazing career and am passionate about what I do. Without the support of my friend, mentor, boss and partner in my business, this would not be possible. Is it as important to me as it once was before cancer, no. At one time in my life, my career, had little work/life balance by my own choice. This is not the case today. I am not sure how I feel about this, as my career is a big part of my life and very important to me. I work with many people who remind me every day why I dedicated my career to this path, and I am grateful for them too.

I am passionate now about correcting wrongs about Breast Cancer Awareness. There is so much misinformation out there. I am dedicated to advocate for a cure. I will do this with by dedicating my time, my money (my friends and supporters’ money  by fundraising) and staying vocal and LOUD about the truth.

Here is what you need to know about Stage IV Metastatic Breast Cancer. This is cancer that has moved out of the breast and into other areas of the body – liver, brain, lungs, skin and bones are the most common areas it will metastasize to. It IS breast cancer in these areas, not a new cancer.

Metastatic breast cancer is the ONLY breast cancer that KILLS. 42,000 women and men in 2019 died from this disease and in 1989, the SAME NUMBER died from this disease. This is so unacceptable. We need to save all these lives. I do not want to be a part of this statistic in the future nor do I want anyone with this disease to be a part of it either.

The only path to a cure is RESEARCH! And research costs money. Research has to include Clinical Trials so that they FDA can approve these drugs to make them available for “standard of care” What does not lead to a cure… PINK RIBBONS; BS messaging that women are being cured from this disease. Yes, Stage 0 to Stage 3 diagnosed women are told they are CURED, and this is amazing BUT 1 in 5 of those women will later hear that their cancer has metastasized to somewhere else in their body and their outlook will change.

Thank you for staying with me, if you are still reading  - remember:
#PINKisaCOLORNOTACURE #StageIVneedsmore BRCA needs more publicity so more understand their risk and can test if they want #RESEARCHNOTRIBBONS

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Stacy Hanson AKA Lucy’s Mom Stacy Hanson